The Economic Burden and Determinant Factors of Parents/Caregivers of Children with Cerebral Palsy in Malaysia: A Mixed Methods Study.

Aniza Ismail,Sazlina Kamaralzaman,Aidalina Mahmud,Ruhana Sk Abd Razak,Leny Suzana Suddin,Ghazali Yusri

doi:10.3390/ijerph19010475

Abstract

The economic burden is a major concern for parents/caregivers of children with cerebral palsy (CP). This study used the sequential explanatory mixed-method approach to explorethe economic burden on parents/caregivers with a CP child in Malaysia and the factors associated with the economic burden. The study period spanned April 2020 and December 2020. A total of 106 questionnaire respondents were selected for the quantitative part, and 15 were interviewed to obtain qualitative input. A retrospective costing analysis was conducted based on the cost data obtained from the questionnaire. The majority of the children were GrossMotor Function Classification System (GMFCS) Level 5 (71%), quadriplegic (63%), and aged >4 years (90%). The estimated annual median total economic burden on the parents/caregivers per child in 2020 was RM52,540.00 (~USD12,515.03), with indirect cost being the greatest cost (RM28,800.00, ~USD6860.16), followed by developmental cost (RM16,200.00, ~USD3858.84), direct healthcare cost (RM4540.00, ~USD1081.43) and direct non-healthcare cost (RM3000.00, ~USD714.60). The annual household income was identified as a significant determinant factor (p=0.019, 95% CI: 0.04, 0.40) of the economic burden. The participants’ responses during the in-depth interview in the qualitative part of the study supported the premise that socioeconomic factors play a substantial role in determining the total economic burden. Our findings may aid local policymakers when planning the greater provision of support to the affected families in the future, especially for the parents/caregivers of children with CP, who are facing socioeconomic challenges.

Highlights

The deductive approach used predetermined areas of discussion based on known challenges faced by the parents/caregivers of cerebral palsy (CP) children, which we identified from the literature manually and independently
The second highest cost incurred by families of children with CP in 2020 was developmental costs (RM16,200.00, ~USD3858.84), followed by direct healthcare costs
There is an increasingtrend in the estimated total economic burden on parents/caregivers for raising a child with CP in Malaysia, totaling around RM52,540.00 (~USD12,515) in 2020, with indirect cost that includes parent and child productivity loss contributing the largest share of the financial burden

Summary

Introduction

Cerebral palsy (CP) is the most common cause of significant motor impairment in children [1]. Despite being the most significant cause of major motor impairment in childhood, CP remains a relatively rare condition, with a birth prevalence of approximately 2 per 1000 births [2]. CP and its associated conditions can impose a significant economic burden on the affected families, the health care system, and the general economy. CP is a common cause of disability in childhood, as it comprises a range of nonprogressive syndromes of posture and motor impairment.

Methods

Results

Discussion

Conclusion